Sharing stories of inspiration from the experiences of an amazing child

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Make Memories for a Lifetime

The truth is that none of us know how long we will be here. We aren’t supposed to know. How could we grow and learn if we were constantly checking our watch for “our time”? This would sway our decisions, possibly put ourselves in reckless situations, or cause us not to live to our potential because we are far too concerned about our society’s notions about the “end”. We can’t live that way! We can choose to live every day to our greatest happiness while planning to do the same the next day whether it will be there or not. We heard the doctor’s predictions for Pheonix. We knew every day was a gift. In the back of our minds we made decisions knowing that this gift was never going to be taken for granted, but we never let it be right up front on center stage. Pheonix didn’t need that weighing on his mind and neither did all of the people in his life. Even the doctors were often in awe and amazement of his accomplishments. Even going so far as to say “don’t rock the boat” when questions would arise on how he could do things he shouldn’t be able to do or why he didn’t suffer some hardships he should have. Pheonix was Pheonix and that meant being comfortable with not having all the answers.

I started this blog a year ago to not only honor our son’s memory and share his incredible stories of triumph, but to help us deal with trying to find our way without him in our lives. I quickly realized that he would never be absent from our lives because of the magnitude of the memories we made together. These memories will carry us through the remainder of this lifetime and hopefully the impact he has made on others will continue to ripple throughout time. “People will forget what you said, people will forget what you did, but people will never forget how you made them feel” – Maya Angelou

Pheonix made us feel hopeful, he made us feel loved, he helped us discover the kind of people we wanted to be, he helped us know how we wanted to live life, and he gave us the strength to remember him with joy on difficult days when all we want is to see his smiling face one more time. Without all of those things, we would have undoubtedly crumbled under the weight of missing him. I am certain that Pheonix is not the only soul of his kind. I bet many of us have had or currently have someone in their life that they can say changed who they are. Pheonix has a huge family and was fortunate to also have loving friends, aides, nurses, and teachers. We could fill several years worth of stories talking about each of them! You guys know who you are! Pheonix knew it! We know it still!!

This last year has been challenging to say the least. The memories we made together are what get us through the days without him. They feel vivid and calming. I see him putting together puzzles patiently with his Grandma or hear her voice as she reads books to him. He never let us do those things with him. Those were just experiences he shared with his Grandma. I loved that because their bond was so special and one that they both needed in this life. I always thought his Grandma was teaching him to appreciate simplicity, to learn to be patient, and to focus on the process of completing something, but I think they were teaching each other. Pheonix had this amazing gift to give people exactly what they needed to be better or feel motivated to do more. He brought out the best in everyone he ever met. I thought for sure though that he was going to get his Grandpa an emergency room visit since he would do just about anything to make Pheonix laugh. Nobody got Pheonix laughing harder than his Grandpa. I can hear them laughing hysterically as my dad would pretend to fall on the ground, tripping over some imaginary obstacle. They both enjoyed physical comedy and I am sure Pheonix got his crazy sense of humor from his Grandpa. They were a riot together! He would make Pheonix laugh when he would tell me that he was going to give Pheonix chicken feet to eat and I would exclaim back in disgust that he better not! Not sure if it was the phrase chicken feet or my disgust and protest that made Pheonix laugh so hard. My fear was always the secret knowledge between the two of them that Pheonix had tried chicken feet. The secret would have been enough to get Pheonix going. He loved the “taboo” or anything that would send his poor mother into some unnecessary state of shock. His Aunt Jenny would get him going by exclaiming “ooohhhh shhhiitt” in the most insane voice with me yelling back at her to stop saying that to him. When something silly would happen, she’d say that to him and he would just laugh and laugh. He knew she wasn’t supposed to be saying that and that made it even funnier! He said it a few times at school when something silly would happen in class. I just had to laugh when the teacher called me because my first reaction was excitement that he was talking. It was always used appropriately and I felt like that was a triumph.

I loved every rotten, typical kid thing he did. When he refused to go to bed and would laugh uproariously as we told him repeatedly that he had to go to bed. He’d laugh all the way down the hallway with the full knowledge that it just wasn’t going to happen. It became a nightly routine an hour or so before he really had to go to bed to carry him to the room, telling him it was time for bed just to hear him laugh and watch him bounce around trying to run from the room in his dad’s arms. It was half loving to listen to him laugh and half running out the last bit of energy he had. That kid would party all night if you let him! Pheonix loved a good party. He was a social butterfly. He had his weekly routine of where he went to socialize. He had to visit his favorite baristas at the coffeehouse. They even started making him his own special drink after we realized he only wanted the whip cream on his smoothie. They would drizzle it with chocolate and caramel and present it with a smile. If you thought you were walking by Mozart’s bakery without getting him cake, you were very wrong! He had his favorite cashier at the grocery store and he could give you directions on how to walk to the library, Woodward park, Grandma’s house, or Carfagna’s from our house. He was a celebrity at the bowling alley and volleyball park. He didn’t want his weirdo parents hanging out with him in the baseball dugout. Don’t even think about embarrassing him in front of girls. I was feeding him at the deli and when he realized the girls behind the counter were watching him, he refused to let me feed him. I gave him the fork and the look on his face when he got that strawberry to his mouth on his own, you would have thought he climbed a mountain! The girls behind the counter cheered for him and he just smiled. I had to smile too. I always got the “look” when I would try to see him at school. I knew he was thinking if you even kiss on me, I will make you pay. I loved it when he wanted to be an independent little boy. He really didn’t have a lot of options in that department because of his physical limitations.

We could go on and on about all of the special memories we have with him. And when we really think about it, they are the same kind of memories that most families make together. It is the every day things that we cherish the most. I think we were more aware of the simple moments because we knew we couldn’t take any day for granted. Every experience was special. Every achievement. Every smile. Every laugh. Every personality quirk. We absorbed every feeling we had when we watched him on his journey because we knew in our hearts that we didn’t have forever. In reality, none of us do. It’s not morbid or sad. It is what it is. Unless something changes, we are human and we won’t live this life forever. Take it in. Absorb those feelings you have. Grow. Love. Live. Smile when the sun hits your face. Laugh freely. Love openly. Not having Pheonix here to hold hurts like hell some days, but when we feel like we are being pulled apart, we think of all the feelings he helped us feel. We think of all the lessons about life that he taught us. We look at ourselves and reflect on who we are. Those things get us through the days. I see his face in my mind and I smile because he smiled. The memories we have made together will carry us through this lifetime. He is not gone and never will be because of what he gave to all of us. We feel his strength and that is our strength now too. He passed away a year ago and because of all of the beautiful memories we made together, it feels like he is still here. We are thankful for and comforted by his continued presence in our lives.